The Early and Uncontrolled Years

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My first 5-6 years as a T1D are really shameful and heartbreaking to reflect on. I think about this period of my life often, but have never explicitly written my experiences down. If you missed my diagnosis story, click here to catch up.

For starters, I was never hospitalized upon diagnosis, even with an A1c over 15%. I have no recollection of the first few weeks after diagnosis. I only remember my doctor coming back in the room and saying there was a problem with my urine sample. I had type 1 diabetes. I didn’t get hooked up to any machines for immediate insulin delivery. Actually, I don’t even remember taking any insulin the first day. I’m not sure what happened. Did I go back to school? ….Sounds like I should ask my mom.

There are a few memories from early on that have always stuck with me. Sitting on the sidelines during gym is one memory. That was horrible; I was always athletic and loved playing sports. Being told I couldn’t was not cool. My eyesight went through phases while I was first being treated with insulin. I had to have my homework and exams printed with extremely large font. My vision was like looking through a tiny hole; I had no peripheral vision. No worries, that went away when I was back to “normal”. I also used to eat peanut butter by the spoonfuls, wait, I still do. But early on, especially. It was like a free food for me.

When reflecting on my diagnosis, and years in high school, I can’t clearly remember what I even did to care for my diabetes. I was 14, a freshman, when I was diagnosed. I do remember going to the nurse’s office before lunch to check my BG and bolus for lunch. That’s about it, and I think that was only for the first few months.

The biggest thing for me was fitting in with my new disease. Fortunately, I had a really great friend group that paid no mind to my t1d and how it impacted me. There are a few times though that they took something off my plate, that I had already bolused for. And they did this without realize the consequences on my diabetes. Kids, that’s it.

Much of my first 5-6 years with t1d were shameful. However, I believe there are two distinct, but also grey, sides to my story. There’s the lack of motivation and care that I approached my diabetes with, and there is the little expertise that my healthcare team could provide. Which had a bigger impact? I’m still contemplating this answer.

For starters, I was on pens for the first 6 years of my t1d life. I had no idea that there was anything else until I was about 17 or 18 and I heard about something called an insulin pump. But heck, who wants something attached to them all the time, was my ignorant opinion back in the day! I had very little control over my ‘betes. I rarely tested. I went based on how I felt. We all know how that goes. But I was convinced I didn’t need to test, that I knew my body, and I knew what to bolus for even without checking. How did I never end up in DKA?! Honestly.

There’s also the fact that I never knew I could inject for a high without eating something. For the first 7 years of my t1d life, I literally thought I had to eat something when I took insulin (Novolog). Why was this never addressed to me? I thought I would just keep dropping if I didn’t eat with an insulin injection. I learned this eye-opening fact from my endo, who I began seeing my second year of college, at 20 years old. My endo also asked me to keep a diabetes diary. I don’t remember my regular health practitioner ever asking for this. I was under his care for 6.5 years.

I had no control over my D while I was in high school, which I know I’ve mentioned in like EVERY paragraph so far. I’m just upset that I wasn’t influenced to care more. I know that no one could MAKE me care, but why wasn’t I manipulated into caring? Basic psychology says it should have worked. Here are my thoughts on how this could have been successful.

I was/am very athletic and enjoyed playing all sports (except basketball). I played ice hockey for 16 years, even in college; and I also played softball. I’m only going to toot my horn for one sentence here. I was really good in both sports, excelling to All-Star teams and catching the eyes of recruiters. Often I find myself daydreaming of how much more I could have excelled if only my diabetes care was better. Instead, my A1cs’ were never below 8% and sat often in the 10-11% ranges (a type 1 diabetic should ideally sit below 7%, whereas a normal person is around 4-5%).

Why didn’t my healthcare team frame the situation around hockey? Hockey was my life, literally the only thing I was truly passionate about. I should have been given steps to maintain great BG control, and given them in a way that told me I could perform better if I did this. Instead, I was often lectured. No one wants to be lectured. That just made me care even less. I needed support and care. They should have played those psychological games on me!

I think I’ll forever contemplate the two roles that were involved with my diagnosis and teenage years. How much could have changed based on my attitude; and how much was out of my control and in the hands of my healthcare team?

Thoughts? Were you hospitalized at diagnosis? If not, do you know why?

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13 Comments

I was diagnosed 10 years back
I was not admitted
Because i was diagnosed as type 2
Went through oral medication and long acting insulin
Until L lost alot of weight
And was started on MDIs 2 years later

It’s hitting ten years for me and I feel like I will succeed this time to be better than diabetes. I am ready to exchange food that I love for more years of life… test results show. My kidneys have begun to be affected

I’m at 10.5 years, so I definitely can relate. I think we all come to a point where we realize the food choices we make are more important than eating it to create a point, because we can. It’s a choice that is healthier and better for us. And once we stop trying to prove a point, the better off we are 🙂

Hi! How are you? I follow your blog because it is very interesting and inspiring. I really love it. How’s your day going? I hope we could be friends. I can’t wait to read your upcoming blog post. Have a good day ahead!

Hey! Great post! I wasn’t hospitalized either. My GP told me on a Saturday morning that he wasn’t sure if I had type 1 or type 2!! I was 21! He then made an appointment for me with an endo for the following Wednesday! My mother wasn’t having any of that, she had a friend of a friend who worked at the diabetes centre and had me in there on the Monday. They said if I had waited until Wednesday I’d be in a coma.

I also went through a period of poor control in the early days but it had more to do with alcohol, I got a tad irresponsible when I got drunk…as you can probably imagine.

Thanks for sharing your story. I love it when I can talk to people who speak my language. 💙💙

Wow. That’s definitely scary to look back and reflect on. I feel like a lot of us were just days/weeks away from a catastrophe. And I definitely understand about the drinking aspect. I went through my fair share of irresponsible behaviors in college too. And thank YOU for reading. It’s definitely therapeutic when someone else gets it!

I hung out in the 7’s and 8’s (A1C-wise) for most of middle, high school and college. I totally concur with your lack of motivation in those early years. I just didn’t care at all. Only cared about being a “normal” kid, trying to fit in, and avoid going low. Great post! Great topic!

Hey Grace! It’s crazy that we all go through such similar phases. If only we had taken better care of ourselves, we might have lived more “normal”, you know? All those high blood sugars were definitely not good for mood swings and our everyday attitudes. Thanks for reading 🙂

I related to this on so many levels! It is so relieving to know I wasn’t the only one who was out of control in their teenage years. I SO wish I had been more motivated. I had a decent healthcare team, but definitely got lectured which made me not even want to try. I am so with you on not checking my blood sugars too- I also used the excuse that I thought I knew where my numbers were based on how my body felt. I do think a large part of it is just being a teenager, and part of me thinks there is nothing that could have changed my thought process back then. I really beat myself up about those years, but what’s important is what we’re doing now ans keeping it up going forward.

Hi Eva 🙂 it’s a great feeling to know that we all share some of the same experiences and that we are, in fact, not alone in our journey! Those dang teenage years and the idiotic belief that we knew what our numbers were based on how we felt. BUT you’re exactly right, it’s better to look forward and not focus on how we treated ourselves as teenagers. Thanks for reading 🙂

Thanks for sharing your story! So much of this resonates. I wasn’t hospitalised either, and it took a good few days for me to be given insulin. I also had the same belief that I couldn’t correct a high without eating – I shudder now to think that my solution was to eat toast and take extra insulin! I did plenty of other silly things too, like not taking my insulin for ages after eating if I was with my friends. I feel the same as you – teen attitudes and denial were partly to blame, but my healthcare professionals really didn’t help. Grr! I wonder how many other t1ds started a similar way?

It’s always amazing and helpful to hear other’s stories. I always tend to fall on the mindset that I’m alone in this and I’m the only one going through “this”. But as it turns out, we are all experiencing so many of the same things! Thanks for letting me know it wasn’t just ME.